Hope for Catarina's Future

Hi everyone, thank you so much for clicking on the link and taking the time to check out this page. This fundraiser is for my younger sister, and the following  will explain why these funds are so important to raise.  Below you will read an explanation written by my mother;
        -Alexis Orphanoudakis

After much thought and exhausting all possible means and resources there are no other options than to ask for your help. We have decided to put our pride aside and do what  must be done to help our daughter. This is literally Catarina's last hope. Catarina and I will be making multiple trips cross country for medical treatment; which is not fully covered by insurance, we will also have associated travel costs and lodging expenses. This is in addition to our family already having $18,000 in medical bills related to deductibles, coinsurance, copays, non-covered medications one which is $48.00 per dose and supplies . We have tried our best to make payments and stay on top of all the incoming bills, but it has become impossible given the magnitude of the balances. We simply cannot afford the payments and all the upcoming travel costs. If the payments are not made and the balance paid off very soon to Catarinas homecare company they will stop shipping this life sustaining nutrition, supplies and infusions. This has been both emotionally and financially devastating. 


Here's her story:

     Catarina was diagnosed with Gastroparesis( Paralysis of the stomach), Colonic Dysmotility (her intestines do not function properly) Chronic Intestinal Pseudo-Obstruction and Superior Mesenteric Artery Syndrome, all of these causing intestinal infections due to the digestive tract not functioning properly. She also has Anemia and multiple vitamin deficiencies related to lack of gut absorption; which is treated with blood transfusions, iron infusions and vitamin injections. In the beginning Catarina lost 30 pounds in 3 months and had to have a feeding tube placed.  After 1 year her disease progressed and she became unable to tolerate any tube feeds, which made it necessary to have a port/ central line placed. She is now connected to TPN (Total Parenteral Nutrition 14 hours a day) ,she has a gastric tube to drain her stomach since it cannot empty on it's own and a Jejunum (small intestines tube) for her liquid/crushed medications. Every 3 months she has to be placed under sedation and have a surgical clean-out of her intestines because she cannot produce a bowel movement on her own. Sedation comes with additional risks for anyone with Mitochondrial Disease. She has not been able to eat or drink anything in almost 4 years. It is believed that the cause of this is neurological damage caused by Mitochondrial Disease which is progressive and degenerative, along with Autoimmune Vasculitis. These diagnoses have caused other bodily system failures and dysfunction including but not limited to; Muscles, joints, neurological, bones, lungs, kidneys, bladder, hormone, respiratory and vision. She will eventually require a kidney transplant and lose her ability to walk among other unfathomable things no person nor parent should have to witness.

     As much of a blessing TPN has been and it has kept her alive, it is not without risk. It is liver toxic and Catarina is already showing signs of liver damage. Her team has prepared us for the eventual liver failure. Currently we are in the Emergency room waiting for an emergency surgery to remove her gallbladder. Also a complication of TPN. 

     Anyone who knows Catarina will describe her as a brave, beautiful, strong young woman who has a love for life and adventure. She tries to take advantage of every good day since she has had so many bad ones; with over 50 hospitalizations all ranging from 3 days to 3 weeks and many missed days from school ,this disease has robbed her of so much but the biggest is the inability to eat or drink. She has accepted her disease and all that goes along with it; the unknowns, braces, wheelchairs, hair loss, etc. What has been the hardest part is not being able to eat. Food is social, its gatherings and holidays. She best described what eating again would mean to her in the following paragraph. It is part of  a much larger essay Catarina wrote about her battle with this horrible rare disease.                                                 

     

"I have ambitions and desires. I am like any other teenage girl. I wonder, will I ever meet someone? Will they accept me for me? Will they stick by my side through bad times and bad days? When I have to say no thank you, I can't eat ,will they understand? Will they love me as I am?  Including my scars, feeding tubes, ports and all. I hope so, but I wonder. I dream of one day eating my wedding cake, having candle lit dinners while looking into someone's eyes, sharing french fries on the boardwalk, having a drink on my 21st birthday, eating popcorn on a theater date and having our hands touch in the bucket, not having to explain at a restaurant the reasons I'm not ordering food and lastly sitting in France at a cafe drinking coffee like in the movies."

    The above reasons are why traveling to Utah is so critical. This doctor Catarina is seeing is a Neuro-Gastroenterologist which is a very small sub specialty, plus she is an expert on the type of damage Catarina has to her digestive tract. This trip will offer Catarina; clinical studies, trials, medications and surgeries not available to her here. It is with the support of her local medical team and after exhausting all treatment and options locally and in the surrounding states that we have had to move ahead with this difficult plan. This is truly her last hope. 

     It will not be easy, my husband, Catarina's dad works two jobs to support our family and will need to stay home to continue to do so. He will also need to help Catarina's older sister who also has her own serious Medical Issues. I have only worked part time the past few years  in order to be Catarina's primary caregiver. I will also need to take an unpaid leave of absence from work. Our family will be separated but are willing to do whatever is necessary to give Catarina the best chance at life.

 

     So with all of that said, anything you can contribute would be appreciated, as well as sharing this page and getting the word out. We honestly don't know how we can possibly do this without help from our friends, family,and community..  All donated money will directly help with Catarina's medical expenses, medical supplies, and traveling expenses for our family.. Thank you in advance for your generosity!